Monday, October 19, 2015

Go Blue on 22 For Dysautonomia

As many of you know, October is Dysautonomia Awareness Month and I had plans to celebrate on the blog and some other ideas, but with my mother deteriorating and then passing two weeks ago, my energies were focused elsewhere.

Yet, I did manage to create an event to celebrate. My birthday is this coming Thursday and I am asking everyone to help me celebrate and raise awareness by “going blue on 22 for Dysautonomia.” I’m asking everyone to wear some kind of blue and post a picture of yourself with the hashtag #Dysautonomia or #MakeNoiseforTurquoise on that day to help me raise awareness. Turquoise is the ribbon color for Dysautonomia Awareness. The event is on Facebook and you can find it here. If you are a patient, you can use it as an opportunity to discuss what subset you have and celebrate your own perseverance

Ask others to join as well. Since many doctors and patients have never heard of Dysautonomia, it is up to us to help raise awareness about this serious condition. More awareness can lead to more research and more treatment options for Dysautonomia patients, especially considering there are no treatments designed specifically for the condition. All medications patients use are taken "off label." Most importantly, with more awareness many patients will not have to go through years of appointments, tests, and doctors who dismiss symptoms as "all in your head," essentially a universal experience for many with Dysautonomia. 

Dysuatonomia is referred to as an "umbrella term" because there are many subsets of the condition 

Feel free to join and participate! I bought some special shirts for me and my husband that will hopefully come in time.

If you would like more information about Dysautonomia, you can find accurate information and more resources for getting involved at Dysautonomia International.

So let's make noise for turquoise together, celebrate our strength, and raise some awareness together!

Here are some past posts that are helpful to understand Dysautonomia and living successfully with illness:

What have you been doing to celebrate Dysautonomia Awarenesss month? 

1 comment:

  1. I am sorry for your loss. May I extend my sincere condolences to you.
    Well done on continuing your awareness-raising despite your grief.
    Your umbrella graphic is great - so easy to understand. I had no idea there were so many terms! I didn't realise that POTS was a type of dysautonomia - I thought they were two separate things because of the two different terms. Good luck with your campaign! You have taught at least one more person today. ;-)


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